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DiscussionLooking for info and people with Neuromyelitis Optica (NMO)
Brain & Nervous System | Last Active: Nov 22, 2022 | Replies (49)Comment receiving replies
Replies to "I got it this time. Thank you, it was very helpful. Ann"
I’m so sorry your husband has this disease also it’s so hard to deal with I went to a Guithy Jackson convention in 2013 there was 200 of is there and Drs from diff places to answer our questions most of the people that has NMO are on pain Meds as Lyrica etc and steroids and that’s the Drs answers mostly is take Meds but that leaves me out I do take an infusion of Ritxuimab to kill the bad B cells so I won’t have a relaps. Does your husband do anything to keep him from relapsing? The conventions are every year the first time you go they pay for your room and Victoria Jackson always has great gluten free food for us . Her daughter came down with this disease when she was 14 and now she’s 19 I believe and on Meds but looks great. Victoria went to the Drs and said let’s find a cure so she very determined wonderful lady I met her she’s so very sweet . You can look up Guithy Jackson foundation and it has a fb also sorry I’m so windy just trying to share cause her and her husband has donated millions of dollars . I’m hoping we will all stand in prayer for a cure so we can have a life again . Take care and you can talk to me anytime .